Garrett's had a rough night tonight. I think he over did it a little the past few days. He's been feeling really good, and I just let him be a "normal boy", as much as possible. He ran and played, walked the zoo and the airplane museum. Both educational, open and few people. All the right stuff to let us attend. Big outings for any kid, to be sure. But these were really huge for Garrett. By tonight, he was played out. He complained about chest discomfort and his heart rate was a little high, so I decided to just have him settle down the rest of the evening. We played a few more obligatory Xbox baseball games, which he won of course, and called it a night while we watched a documentary story about a WWII B-17, the Memphis Belle. But by 1130pm, he was fussing and fighting in his sleep. He's had a history of this but it has been better since getting his new heart. I'm hoping and praying it is not a sign of something bad. That's always one of the hard parts. When can we separate 'normal' growing pains from something that is dangerous? We almost waited too long last time. It's times like these that make me truly understand and appreciate why they have us stay close to the hospital for several months.
His heart rate is great now and after waking a neighbor to get our heating pad back, he was sleeping quietly after about an hour of watching hunting videos with dad. That's sort of a tradition. Over the years when he's had a bad night, and there were many of them, he and I would watch old National Finals Rodeo videos or hunting videos to take his mind off of his pain. If I had a baseball game being played, that would have been in the lead for choice of the evening.
His clinic check up was good today. No big changes to speak of. Another change in medicine to keep trying to balance the cyclosporin levels until next time. That's why we celebrated with a trip to the air museum at Lowry. He really spun his head in that place. It was also very cool to show him planes and equipment that his grandpy had flown in and used, and his uncle, and another couple of friends, and to see a room dedicated to the Air Force Academy where his two cousins are going to school.
Y'know, I visited with a friend the other day and was asked what my plans were going to be for the future with work and play. I don't have that answer right now. Before this all happened, I was in the process of trying to start a very long series of administrative loop holes to get my place properly zoned to sell. I had been planning on another big summer trip with the Pikes Peak Range Riders, one that I always look forward to taking in, and planned on taking care of some external family issues, etc., etc. What I do know for sure, is that I have to put my son and his health, and the whole family's emotional health at the forefront of my decision making process. Safe to say there will be no Range Ride this year, unfortunately. The property issue....well, I just need to keep praying on it. Money's tight, but somehow God will provide. Work....well, work will just have to work out when it does. The Office has been good about giving me the freedom to be with my family during this time. For some reason, it seems more difficult this time around. Not hard from the standpoint of the wait, for we received a heart so soon. But more because there are four of us now who all understand to some degree what the implications can be, living in one room, in a home filled with other families who are dealing with their own tragedies. There are challenges, to be sure. But there are also many, many blessings. I told my friend that right now, I just want to see my little cowboy graduate from high school. It's hard to focus on much more than that.
Garrett cried the other day, wanting to go back to church again. For obvious reasons, we have not been attending as the services are typically very packed. We try to make sure we read scripture every day, pray several times a day as a family and try to walk the walk and talk of God all through the day. But those don't give us everything we need. I will find something soon so we all can get fed in His house like we're supposed to.
I realize how how weak and fruitless any words of mine can be at times, when I try to convey my sincere appreciation to God for the many blessings he has given me. I know of no other father who has been able to spend this much time with his family over the years. Granted, it has come at a price, but I am lucky just the same. I'm reminded of a statement made by Thomas Paine many, many years ago. He was speaking of America's freedoms, but it can also apply to our situation and many people like us. He said "Those who expect to reap the blessings of freedom must, like men, undergo the fatigue of supporting it". Just one more day, every day, IS worth all the fatigue it takes to get there.
Have a blessed weekend.